Supportive Care in Cancer

, Volume 22, Issue 3, pp 847–857 | Cite as

The end-of-life phase of high-grade glioma patients: a systematic review

  • Eefje M. Sizoo
  • H. Roeline W. Pasman
  • Linda Dirven
  • Christine Marosi
  • Wolfgang Grisold
  • Günther Stockhammer
  • Jonas Egeter
  • Robin Grant
  • Susan Chang
  • Jan J. Heimans
  • Luc Deliens
  • Jaap C. Reijneveld
  • Martin J. B. TaphoornEmail author
Review Article



High-grade gliomas (HGG) are rare and incurable; yet, these neoplasms result in a disproportionate share of cancer morbidity and mortality. Treatment of HGG patients is directed not merely towards prolonging life but also towards quality of life, which becomes the major goal in the end of life (EOL). The latter has received increasing attention over the last decade.


We reviewed the literature related to the EOL phase of HGG patients from 1966 up to April 2012. Articles were retrieved from PubMed, Embase, Cinahl, PsycINFO and Cochrane database. We then selected papers for analysis using pre-determined inclusion criteria and subtracted information on the topics of interest.


The search yielded 695 articles, of which 17 were classified eligible for analysis according to pre-defined inclusion criteria. Reviewed topics were symptoms and signs, quality of life and quality of dying, caregiver burden, organization and location of palliative care, supportive treatment, and EOL decision making. Nearly all identified studies were observational, with only two non-randomized intervention studies. Symptom burden is high in the EOL phase and affects the quality of life of both patient and carer. Palliative care services are more intensively used compared to other cancer patients. Cognitive deficits increase as the disease progresses, hampering communication and decision making.


The EOL phase of HGG is substantially different from other patient groups, and more clinical studies in HGG on supportive medication, advance care planning and decision making are required. The organization of care, development of guidelines and interventions to decrease caregiver burden in the EOL phase are critical as well.


End of life High-grade glioma Palliative care Caregiver burden End-of-life decision making 



The authors received funding from St. Jacobusstichting, The Hague, the Netherlands.

Conflict of interest

All authors have declared no conflicts of interest.


  1. 1.
    Crocetti E, Trama A, Stiller C, Caldarella A, Soffietti R, Jaal J, Weber DC, Ricardi U, Slowinski J, Brandes A (2012) Epidemiology of glial and non-glial brain tumours in Europe. Eur J Cancer 48:1532–1542PubMedCrossRefGoogle Scholar
  2. 2.
    Ricard D, Idbaih A, Ducray F, Lahutte M, Hoang-Xuan K, Delattre JY (2012) Primary brain tumours in adults. Lancet 379:1984–1996PubMedCrossRefGoogle Scholar
  3. 3.
    Stupp R, Mason WP, van den Bent MJ, Weller M, Fisher B, Taphoorn MJ, Belanger K, Brandes AA, Marosi C, Bogdahn U, Curschmann J, Janzer RC, Ludwin SK, Gorlia T, Allgeier A, Lacombe D, Cairncross JG, Eisenhauer E, Mirimanoff RO (2005) Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med 352:987–996PubMedCrossRefGoogle Scholar
  4. 4.
    van den Bent MJ (2007) Anaplastic oligodendroglioma and oligoastrocytoma. Neurol Clin 25:1089–1109PubMedCrossRefGoogle Scholar
  5. 5.
    Preusser M, de Ribaupierre S, Wohrer A, Erridge SC, Hegi M, Weller M, Stupp R (2011) Current concepts and management of glioblastoma. Ann Neurol 70:9–21PubMedCrossRefGoogle Scholar
  6. 6.
    Sepulveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative care: the World Health Organization’s global perspective. J Pain Symptom Manage 24:91–96PubMedCrossRefGoogle Scholar
  7. 7.
    Foley KM, Carver AC (2001) Palliative care in neurology. Neurol Clin 19:789–799PubMedCrossRefGoogle Scholar
  8. 8.
    Becker G, Hatami I, Xander C, Dworschak-Flach B, Olschewski M, Momm F, Deibert P, Higginson IJ, Blum HE (2011) Palliative cancer care: an epidemiologic study. J Clin Oncol 29:646–650PubMedCrossRefGoogle Scholar
  9. 9.
    Horowitz S, Passik SD, Malkin MG (1996) ‘In sickness and in health’: a group intervention for spouses caring for patients with brain tumors. J Psychosoc Oncol 14:43–56CrossRefGoogle Scholar
  10. 10.
    van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, Janssen AG, Pasman HR, Rietjens JA, Prins CJ, Deerenberg IM, Gevers JK, van der Maas PJ, van der Wal G (2007) End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 356:1957–1965PubMedCrossRefGoogle Scholar
  11. 11.
    Taillandier L, Blonski M, Darlix A, Hoang XK, Taillibert S, Cartalat CS, Piollet I, Le Rhun E (2011) Supportive care in neurooncology. Rev Neurol (Paris) 167:762–772CrossRefGoogle Scholar
  12. 12.
    Taillibert S, Laigle-Donadey F, Sanson M (2004) Palliative care in patients with primary brain tumors. Curr Opin Oncol 16:587–592PubMedCrossRefGoogle Scholar
  13. 13.
    Chandana SR, Movva S, Arora M, Singh T (2008) Primary brain tumors in adults. Am Fam Physician 77:1423–1430PubMedGoogle Scholar
  14. 14.
    Batchelor TT, Byrne TN (2006) Supportive care of brain tumor patients. Hematol Oncol Clin North Am 20:1337–1361PubMedCrossRefGoogle Scholar
  15. 15.
    McNamara S (2008) An overview of palliative care for patients with brain tumours: an interprofessional approach. Br J Neurosci Nurs 4:435–437Google Scholar
  16. 16.
    Catt S, Chalmers A, Fallowfield L (2008) Psychosocial and supportive-care needs in high-grade glioma. Lancet Oncol 9:884–891PubMedCrossRefGoogle Scholar
  17. 17.
    Ford E, Catt S, Chalmers A, Fallowfield L (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro Oncol 14:392–404PubMedCentralPubMedCrossRefGoogle Scholar
  18. 18.
    Behin A, Hoang-Xuan K, Carpentier AF, Delattre JY (2003) Primary brain tumours in adults. Lancet 361:323–331PubMedCrossRefGoogle Scholar
  19. 19.
    Triebel KL, Martin RC, Nabors LB, Marson DC (2009) Medical decision-making capacity in patients with malignant glioma. Neurology 73:2086–2092PubMedCrossRefGoogle Scholar
  20. 20.
    Pace A, Di Lorenzo C, Capon A, Villani V, Benincasa D, Guariglia L, Salvati M, Brogna C, Mantini V, Mastromattei A, Pompili A (2012) Quality of care and rehospitalization rate in the last stage of disease in brain tumor patients assisted at home: a cost effectiveness study. J Palliat Med 15:225–227PubMedCrossRefGoogle Scholar
  21. 21.
    Cavers D, Hacking B, Erridge SC, Morris PG, Kendall M, Murray SA (2012) Adjustment and support needs of glioma patients and their relatives: serial interviews. Psychooncology 22:1299–1305PubMedCrossRefGoogle Scholar
  22. 22.
    Bausewein C, Hau P, Borasio GD, Voltz R (2003) How do patients with primary brain tumours die? Palliat Med 17:558–559PubMedCrossRefGoogle Scholar
  23. 23.
    Oberndorfer S, Lindeck-Pozza E, Lahrmann H, Struhal W, Hitzenberger P, Grisold W (2008) The end-of-life hospital setting in patients with glioblastoma. J Palliat Med 11:26–30PubMedCrossRefGoogle Scholar
  24. 24.
    Sizoo EM, Braam L, Postma TJ, Pasman HR, Heimans JJ, Klein M, Reijneveld JC, Taphoorn MJ (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol 12:1162–1166PubMedCentralPubMedCrossRefGoogle Scholar
  25. 25.
    Faithfull S, Cook K, Lucas C (2005) Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided. Palliat Med 19:545–550PubMedCrossRefGoogle Scholar
  26. 26.
    Pace A, Di Lorenzo C, Guariglia L, Jandolo B, Carapella CM, Pompili A (2009) End of life issues in brain tumor patients. J Neurooncol 91:39–43PubMedCrossRefGoogle Scholar
  27. 27.
    Ostgathe C, Gaertner J, Kotterba M, Klein S, Lindena G, Nauck F, Radbruch L, Voltz R (2010) Differential palliative care issues in patients with primary and secondary brain tumours. Support Care Cancer 18:1157–1163PubMedCentralPubMedCrossRefGoogle Scholar
  28. 28.
    Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K (2010) A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs 16:24–30PubMedGoogle Scholar
  29. 29.
    Gofton TE, Graber J, Carver A (2012) Identifying the palliative care needs of patients living with cerebral tumors and metastases: a retrospective analysis. J Neurooncol 108:527–534PubMedCrossRefGoogle Scholar
  30. 30.
    Davies E, Clarke C (2005) Views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma. J Neurol Neurosurg Psychiatry 76:555–561PubMedCrossRefGoogle Scholar
  31. 31.
    Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol 10:61–72PubMedCentralPubMedCrossRefGoogle Scholar
  32. 32.
    Sherwood PR, Given BA, Doorenbos AZ, Given CW (2004) Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. Int J Palliat Nurs 10:67–75PubMedGoogle Scholar
  33. 33.
    Salander P, Spetz A (2002) How do patients and spouses deal with the serious facts of malignant glioma? Palliat Med 16:305–313PubMedCrossRefGoogle Scholar
  34. 34.
    Addington-Hall J, Altmann D (2000) Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses? J Adv Nurs 32:799–806PubMedGoogle Scholar
  35. 35.
    Sizoo EM, Pasman HR, Buttolo J, Heimans JJ, Klein M, Deliens L, Reijneveld JC, Taphoorn MJ (2012) Decision-making in the end-of-life phase of high-grade glioma patients. Eur J Cancer 48:226–232PubMedCrossRefGoogle Scholar
  36. 36.
    Pace A, Parisi C, Di Lelio M, Zizzari A, Petreri G, Giovannelli M, Pompili A (2007) Home rehabilitation for brain tumor patients. J Exp Clin Cancer Res 26:297–300PubMedGoogle Scholar
  37. 37.
    Seeber AA, Hijdra A, Vermeulen M, Willems DL (2012) Discussions about treatment restrictions in chronic neurologic diseases: a structured review. Neurology 78:590–597PubMedCrossRefGoogle Scholar
  38. 38.
    Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, Blanchard M, Bissett M, Iliffe S (2010) End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry 25:329–337PubMedCrossRefGoogle Scholar
  39. 39.
    Mitsumoto H, Rabkin JG (2007) Palliative care for patients with amyotrophic lateral sclerosis: "prepare for the worst and hope for the best". JAMA 298:207–216PubMedCrossRefGoogle Scholar
  40. 40.
    Gilbertson-White S, Aouizerat BE, Jahan T, Miaskowski C (2011) A review of the literature on multiple symptoms, their predictors, and associated outcomes in patients with advanced cancer. Palliat Support Care 9:81–102PubMedCrossRefGoogle Scholar
  41. 41.
    Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, Morton SC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Sun VC, Shekelle PG (2008) Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 148:147–159PubMedCrossRefGoogle Scholar
  42. 42.
    Raijmakers NJ, van Zuylen L, Costantini M, Caraceni A, Clark J, Lundquist G, Voltz R, Ellershaw JE, van der Heide A (2011) Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects. Ann Oncol 22:1478–1486PubMedCrossRefGoogle Scholar
  43. 43.
    Johnston B, McGill M, Milligan S, McElroy D, Foster C, Kearney N (2009) Self care and end of life care in advanced cancer: literature review. Eur J Oncol Nurs 13:386–398PubMedCrossRefGoogle Scholar
  44. 44.
    Krouwer HG, Pallagi JL, Graves NM (2000) Management of seizures in brain tumor patients at the end of life. J Palliat Med 3:465–475PubMedCrossRefGoogle Scholar
  45. 45.
    de Groot M, Reijneveld JC, Aronica E, Heimans JJ (2012) Epilepsy in patients with a brain tumour: focal epilepsy requires focused treatment. Brain 135:1002–1016PubMedCrossRefGoogle Scholar
  46. 46.
    Anderson GD, Saneto RP (2012) Current oral and non-oral routes of antiepileptic drug delivery. Adv Drug Deliv Rev 64:911–918PubMedCrossRefGoogle Scholar
  47. 47.
    Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14:1094–1103PubMedCrossRefGoogle Scholar
  48. 48.
    Singer PA, Robertson G, Roy DJ (1996) Bioethics for clinicians: 6. Advance care planning. CMAJ 155:1689–1692PubMedCentralPubMedGoogle Scholar
  49. 49.
    Astrow AB, Sood JR, Nolan MT, Terry PB, Clawson L, Kub J, Hughes M, Sulmasy DP (2008) Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. J Med Ethics 34:664–668PubMedCentralPubMedCrossRefGoogle Scholar
  50. 50.
    El-Jawahri A, Podgurski LM, Eichler AF, Plotkin SR, Temel JS, Mitchell SL, Chang Y, Barry MJ, Volandes AE (2010) Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. J Clin Oncol 28:305–310PubMedCrossRefGoogle Scholar
  51. 51.
    van der Heide A, de Vogel-Voogt E, Visser AP, van der Rijt CC, van der Maas PJ (2007) Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives. Support Care Cancer 15:1413–1421PubMedCentralPubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Eefje M. Sizoo
    • 1
  • H. Roeline W. Pasman
    • 2
  • Linda Dirven
    • 1
  • Christine Marosi
    • 3
  • Wolfgang Grisold
    • 4
  • Günther Stockhammer
    • 5
  • Jonas Egeter
    • 6
  • Robin Grant
    • 7
  • Susan Chang
    • 8
  • Jan J. Heimans
    • 1
  • Luc Deliens
    • 2
    • 9
  • Jaap C. Reijneveld
    • 1
    • 10
  • Martin J. B. Taphoorn
    • 1
    • 11
    Email author
  1. 1.Department of NeurologyVU University Medical CenterAmsterdamThe Netherlands
  2. 2.Department of Public and Occupational Health and the EMGO Institute for Health and Care Research, Expertise Center for Palliative CareVU University Medical CenterAmsterdamThe Netherlands
  3. 3.Department of Internal Medicine I, Clinical Division of Medical OncologyMedical University of ViennaViennaAustria
  4. 4.Department of NeurologyKaiser Franz Josef HospitalViennaAustria
  5. 5.Department of NeurologyInnsbruck Medical UniversityInnsbruckAustria
  6. 6.Department of Psychiatry and PsychotherapyInnsbruck Medical UniversityInnsbruckAustria
  7. 7.Edinburgh Centre for Neuro-OncologyWestern General HospitalEdinburghUK
  8. 8.Department of Neurological SurgeryUniversity of CaliforniaSan FranciscoUSA
  9. 9.End-of-Life Care Research GroupGhent University and Vrije Universiteit BrusselBrusselsBelgium
  10. 10.Department of NeurologyAcademic Medical Center AmsterdamAmsterdamThe Netherlands
  11. 11.Department of NeurologyMedical Center HaaglandenThe HagueThe Netherlands

Personalised recommendations